Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 Amendment to the script. I am without a doubt very cynical. However, along with the CP has come the experience that I can reliably expect straight talk, advice, insight from any parent (just about) of a special needs child. Crosby >>===== Original Message From ccrosby <ccrosby@...> >===== >I appreciate reading the many thoughtful responses on the topic of having >a child with a disability, a difference in the family. For me, it is always a >mix of feelings. There are the highs and there are the lows and I struggles >to stay somewhere in the middle, balanced. Some of what I have to say >you might not want to put in your book, but I think maybe the feelings are >realistic. > > >> Deep down I know that I will never >>get over>the pvl, the cp. When I heard the diagnosis, it felt like watching >those planes hitting those towers, one by one. I replayed the words over >and over again and saw my whole life crumple right in front of me. > >Some say it gets easier but at times I just don't believe >>that. The emotional issues that do not go away entirely. I am >>lucky because my son Isaiah, (20 months) while he had tremendous >functional >>deficits, he is a straightforward baby and easy to take care of, amuse. He >>is very adoring and receptive child. He laughs all the time. He eats salad >>with blue cheese dressing amongst other things. He makes his share of >>noise and has a few words. So I am lucky. I say that because after >>receiving the devastating spastic quad cp diagnosis (January, 2002) I >>then very bravely took Isaiah to see a developmental ped. Just so I could >hear more bad news. The news was pretty heartbreaking. The doctor >looked at me and said I'd be lucky if Isaiah >>ever knew his name. He was wearing a Mickie Mouse tie and his last >name was Wolf. That goes to show you that doctors who wear Disney >ties are not necessarily kid-friendly. What he said turned out not at all to >be true. However I have had enough bad news to rebuild those towers. It >all continues to be >>shocking. I have come to just expect more bad news. That is >>what the New Years means to me. More bad news. Let's think. What >little wrapped treasure could it be ? If I am lucky I will be hit by an >uninsured motorist. The good news is that I am practically >>rock-proofed, although I have times when I just want to deteriorate - or >strangle someone. >> >>I am surrounded by triggers on a daily basis. For one I have two >teen-age >>stepsons. I contribute heavily to their tuitions. My job pays for the college >>tuition for one stepson. The other kid goes to a special school out in >>Idaho (CEDU) for kids with issues. It is an enormous privilege. And both >>my stepsons ski, hang gliders, do wilderness camping, roller blade, play >guitar and >>every other cool activity. My husband at one time was a professional >skier >>and our house was covered with trophies until recently. He reads every >>ski magazine out there. I am not remotely interested in sports. However it >>is my dream and continues to be that my son Isaiah would some day >>ride a bike. Am I a lunatic for having this fantasy ? >> The dream never entirely fades but it is not in keeping with >>the reality of the situation. The contrast is so jarring and painful. I >>recall >>last summer I took my son to a beach. I remember I felt like we were >>being stared at. I remember just feeling bad every time I watched >another >>child run around with a pail and shovel. I remember feeling like maybe I >>was wanting too much. Some days I feel like life is mocking me. With >>that comes the bunker mentality. Stay at home. To some extent it works. >>But I am resentful for that too. I feel like my husband is blessed because >>his parenting is more balanced. At least he understands and can relish >>the pleasure of taking his kids camping or coaching Little League. I feel >>like I get the short end of the stick. We have been trying to get a stander >>now for Isaiah for over 5 months. Despite all his apparent >developmental issues, I just cannot prove medical necessity. I feel like I >cannot provide him with what he needs. What kind of satisfaction is that ? >So I >>have all these rotten feelings. > >> >> Occasionally I get wild bursts of inspiration to act on my rotten feelings. >>Recently I curbed the urge to send my obstetrician a nasty nasty >>Christmas card. The other alternative I considered would be to >bombard >>her office with faxes. Or hang out in her waiting room and stuff all the >>Baby Talk magazines full of the public record of all the malpractice suits >>she has been involved in - what you would never know until it happened >to >>you. I have even thought of throwing rocks through her living room >window ! I feel justified. I feel like I was betrayed by this practice that >I >placed all my trust >>in . I will never forget it. So yeah, I feel like I got jipped and it's >>hard to >>manage the vengeful urges. > >Their offices, where my son was born is not far from where I live. I >>drive several blocks out of my way so that I never pass this office, this >>hospital. The contours of the hallways of the NICU, the ritual rinsing of >>hands before you enter, the breast pumping room, the beeping >monitors, >>are still fresh to me, deeply impressed within the vault of memory. Is that >>strange ? Am I nuts? >> >> >>I am now almost two years away from the NICU and no longer such a >rookie. In the beginning I believed I was going to find the cure for cp on the >internet. I surfed the internet relentlessly every night looking for medical >definitions, for research, for miracles. I could not believe what I read. I >never heard of children who don't walk or talk. That is, I feel the ultimate >cruelty. > >What is >>more cruel for me today are the institutional hurdles.... the insurance >appeals, >>not having the stander Isaiah needs so badly, being denied >hippotherapy by >>the insurance carrier, then arguing over the IEPs, the IEPS not being >>carried out, putting him in a day care for special needs kids that won't >buy >>him adaptive toys, an adaptive swing, et, and then days where I feel >swept up in a web of do-gooders. The bureaucracy that serves >>these children is a killer. Some days I go to bed imagining I am involved >>in a Soviet-style conspiracy that is just determined that I am going to end >>up cutting my own throat. > > I am very cynical. I perceive this life (and most everyone in it) pretty >pessimistically. Oddly, we can easily sacrifice Lott for racist remarks but >gladly receive Dr. Frist, the holy white Heal the Party- Senator. It does >not >seem to bother anyone that his documented wealth is at 40 million and >that all his money is stashed away in blind trusts. He is a shareholder in a >hospital corporation (an enterprise of his father and brother) that was >indicted for 1.7 billion dollars for medicare fraud. So he made a fortune in >health care fraud ! How sickening is that ! > >With all the cynicism, I have learned how important it is to keep my mouth >shut. > > So I smolder and plot and advocate and research, throw rocks and >rock-proof, and appeal and re-appeal and litigate . I write letters to >people I don't even know and will probably never actually meet. That's >what I do. > > > Crosby, Philadelphia >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
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